Depression and Alzheimer’s

“Depression is never normal.”  

Not even for someone with dementia.

In the most recent series of posts, we’ve been spotlighting some “what-ifs”: the sudden questions that can blindside caregivers as they contemplate what challenges the future might hold. Today, however, we’re taking a side trip to look at the issue of depression and the impact it can have on a loved one with Alzheimer’s.

According to the Alzheimer’s Association, it’s not uncommon for people with Alzheimer’s to be depressed, especially in the early and middle stages of the disease. In fact, the Association says, “Experts estimate that up to 40 percent of people with Alzheimer’s disease suffer from significant depression.”

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And yet, “depression is never normal.” Shortly after I became Mom’s caregiver, I heard those words from well-known Dallas-area geriatric psychiatrist Dr. David Crumpacker. He was addressing a group gathered in a comfortable public room at an assisted living facility. The subject was Alzheimer’s.

Speaking for myself, the fact that 40 percent of people diagnosed with Alzheimer’s become depressed doesn’t surprise me. But Dr. Crumpacker’s words did surprise me. “Depression is never normal.” Not even for someone with Alzheimer’s? No, not even for someone with Alzheimer’s.

What does that mean? Why did the doctor make such a point of saying that, even when someone is diagnosed with such a cruel disease as Alzheimer’s, depression shouldn’t be considered a “normal” consequence?

Because, unlike Alzheimer’s, depression can be treated. And available treatments, the Alzheimer’s Association says, can lead to “significant difference in quality of life.”

And that’s information caregivers should act on. If you even suspect the person you’re caring for is depressed, pursue a diagnosis. As with virtually everything related to the changed behaviors that accompany Alzheimer’s, the first critical step for a caregiver is letting the doctor know.

You’re probably aware that Alzheimer’s can complicate the diagnosis and treatment of other illnesses. That includes depression. For one thing, the two illnesses share some symptoms, such as isolation, loss of interest in activities and hobbies, confusion and impaired thinking. And the cognitive impairment our loved ones experience may make it more difficult for them to describe their feelings and symptoms. Because of this, the Alzheimer’s Association says, “It may be helpful to consult a geriatric psychiatrist who specializes in recognizing and treating depression in older adults.” But caregivers can begin by talking to the primary care physician.

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Don’t assume that, because he or she knows your loved one has Alzheimer’s, the doctor will automatically know the issues that most dramatically affect your loved one’s health and quality of life. Moods or behavior you observe that concern you should be brought to the doctor’s attention. I emphasize this because, as a new caregiver, I wrongly assumed the doctor would take the lead. I made the mistake of thinking, “The doctor knows this disease. He knows all the important topics to be discussed, all the important problems we’re encountering in caring for Mom.  If he doesn’t bring it up while we’re here in his office, it’s not really important.”

I was wrong. But I was fortunate. The results of my mistake could have been far more serious than they were.

In the next post, I’ll describe how I learned about the effects of depression on someone with Alzheimer’s. But for now, the facts are clear:

  • Depression is never normal.
  • Depression is not uncommon in Alzheimer’s patients.
  • Depression can be treated.
  • Treatment for depression may lead to significant improvement in quality of life for the one you care for.

I’ve experienced that shift from dark to brighter; I pray you can, too.

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Why are you cast down, O my soul? And why are you disquieted within me? Hope in God, for I shall yet praise Him….   (Ps. 42:5  NKJV)

Father, be with us as we care for our loved ones. Help us to see what we need to see, and then do what is necessary to protect them. Thank You that we are never alone.

Christmas Remembered

A repeat of last year’s Christmas post. I hope it makes you smile. All caregivers need extra smiles at this time of year. Blessings to you, alleluia, and glory in the highest!

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The techno tree stood on a maple table in front of the windows in the den. An unlikely hero, it was less than two feet tall counting the motorized revolving base. Forest green branches stuck out from its black metal trunk, short and spikey at the top, longer toward the bottom, giving it the approximate shape of a fir tree. A Christmas tree, unadorned save for fiberoptic lights that, at the flip of a switch, glowed in changing colors from the tip of each branch.

My sister gave the tree to my parents in the hope it would brighten this holiday dimmed by Alzheimer’s. But my father had little faith anything could penetrate Mom’s darkness.  Thanksgiving had passed like any other day, and the weeks that followed carried no promises of Christmas cheer. As I made daily trips from my home to theirs to help him care for her, I saw no signs this year would be better than last.

A year ago Dad and I made cookies, wrapped gifts, lit lights and hung ornaments on a small, fragrant fir tree. I draped a white sheet over a side table and there, on 250 thread count snow, I arranged the old figures around the shaggy stable. Joseph, bound by human devotion to a task of divine magnitude, held a pottery lantern in his upraised hand. Mary, all fear erased from her scratched peach face, gazed upon her sleeping Son. Even the donkey and the sad-eyed cow looked to the manger where Jesus, Light of the world, dozed in the flickering rays of Joseph’s paint-chipped lantern.

But Mom had forgotten about the stable and the Baby, and though she ate most of the cookies, she professed to like “those regular ones” better. As for the gifts, they evoked so many questions, repeated hour after hour, day after day, eventually I put them out of sight.

So I understood Dad’s doubts. This year, until the gift of the funky little tree, we made no Christmas preparations. Twelve months had stolen so much more from Mom and filled the empty spaces with new fears, more confusion. The good days were rarer; the bad ones, worse.

Almost forgotten, the tree sat dark until late evening on one of the difficult days. As Mom sat at the kitchen table with Dad and me, her face still wore vestiges of the anger that had propelled her through the day. She perched crooked and stiff on the edge of the chair. Her feet shuffled like children who couldn’t be still. Our spirits were brittle with fatigue; the house, chill with despair.

Perhaps it was desperation that turned Dad’s gaze out of the kitchen, away from the heaviness that shrouded the table. Then his feet followed his eyes into the den.

“Where are you going?  What are you doing?” Mom’s voice was hoarse and hard.

christmas-treeI watched with her as Dad walked to the table where the metal tree with the bottle-brush boughs stood almost invisible against the heavy drapes behind it. He said nothing, only bent down and flipped the switch on the tree’s plastic base. From the fiberoptic branches tiny beams of color, delicate as starlight, shone on the curtains and ventured out across the room.

With a tiny hum, the tree turned ever so slowly. And ever so slowly, Mom relaxed. Her feet were still. Her shoulders sagged into the back of the chair.

“It’s a Christmas tree, honey.” Dad’s voice was low and soft, like the muted sound of church bells traveling over snow. “Do you like it?  It’s a Christmas tree.”

Just as softly, I began to sing.  “O Christmas tree, O Christmas tree, how lovely are thy branches….”

The old German carol. Mom’s favorite. In the time of my childhood when the first strains of Christmas music opened my heart like a jewelry box ready to receive all the bright treasures of the season, I waited each year with great anticipation for my mother to hear “her” carol playing on the radio. When she did, she would stop what she was doing and sing along. My sister and I watched her, smiling in wonder at the change in her face.  Every feature softened as she lifted her chin and raised her eyes to a long ago past. We could feel the room grow warmer as she sang. When the music ended, she always said the same words: “We learned that song in school.”

It was like a story to us, Mom’s singing and her words. Most of the story was told in the look on her face and the emotion in her voice, with the outcome always the same:  love for the fair fir tree.

Peace. Happiness. That was Christmas, she taught us, using only her memories and the words of her favorite carol.

Now, in the December of her life, all unaware, Mom reminded Dad and me what the season was about. Apparently not even Alzheimer’s could steal that remembrance from her. Somehow, evoked by the techno tree with its sweet hypnotic light, the melody of the old carol had survived in her memory, like a gift still wrapped in bright hope, the paper unwrinkled by age, the ribbons unfaded by the experiences of a lifetime.

“O fir tree dark, O fir tree fair…” I sang on to her. Then at the end, “You learned that song in school, right?”

And once again the gift unwrapped itself on Mom’s face. Anxious lines opened into softness and, subtle as candlelight, her eyes flickered in recognition of…what?

Peace, the heart of the Christmas story. A tree, a Gift. The sweetest story.  The oldest, the eternal carol.

“Glory in the highest!”

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And she brought forth her firstborn Son, and wrapped Him in swaddling cloths, and laid Him in a manger, because there was no room for them in the inn.And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “Glory to God in the highest, And on earth peace, goodwill toward men!”  (Luke 2:7,13-14 NKJV)

Welcome, LORD Jesus. You are our Glad Tidings. You know all our joys and our sorrows.  Prince of our peace, hold us while we sing a lullaby, to You and to our loved ones.

 

What If…?

The what-if’s of caring for a loved one with Alzheimer’s can defeat us before we even start to fight. They can be overcome—knowing the truth of that statement is the first step to victory—but defeating them requires action.

We’re all familiar with what-if’s. They pop up all the time, it seems. What if I get lost? What if I have a flat tire? What if I oversleep? What if…? What if…? What if…?

What if something bad happens?

Caring for a loved one with Alzheimer’s is difficult enough without entertaining the what-if’s. If you allow the Alzheimer’s what-if’s to get a foot in the door, they’ll suck all the air out of the room. Your caregiving creativity will faint from lack of oxygen and the confidence and determination that get you through your day will melt and run down your back like sweat.what if

Yes, it’s hard to escape fear. The extreme unpredictability that goes along with Alzheimer’s produces thoughts that can range from “What if Mom won’t get in the car to go to the doctor today?” to “What if I get sick? Really sick? Who’ll take care of Mom then?”

How do we turn those thoughts off? Well, we can’t just push them out of our heads. What we must do is replace them with other thoughts. In this case, we replace the negatives with positives, the doubts with certainties, the fears with strategies for action.

In short, we plan.what's your plan

Plan. I know from experience that’s easy to say and hard to do. Deciding in advance what you’ll do in a particular situation is especially challenging when you’re dealing with a disease like Alzheimer’s. Symptoms vary widely. There’s no dependable time-line for progression of the disease. And each person experiences Alzheimer’s in an absolutely unique way. So where can a caregiver even begin to plan?

Actually, the starting point is simple to determine:

You start with what is. Right here, right now. Keeping your mind occupied with solving the challenges of the present can turn fearful thoughts into a feeling of accomplishment.

And don’t forget to watch for opportunities to laugh. Mom trying to chew with her dentures in upside down began as a mysterious problem and ended with laughter and a potato chip snack. Thinking and talking about good memories, short or long term memories, is better than imagining disasters.

For the larger questions and situations we anticipate will come up in the future, we engage in more formal planning. First determine the issues that must be planned for. Then study the information you find on the topic, talk to people who have knowledge and experience in each area, and come up with a list of options. Alzheimer’s caregiver support groups are an excellent source of information. You’ll meet people there who are facing or have already faced the situations you’re planning for. You’ll find candid discussions, information based on personal experience, practical advice and suggestions. In addition, there will be a trained group leader who can direct you to even more helpful resources.

choices

Perhaps you’ll be able to rank the options in order of your preference, perhaps even determine exactly what you think is best to do. But at the very least, when the issue comes up and it’s time to take action, you’ll have a list of options.

Information is the best defense against the what-if’s. In the weeks ahead, I’ll be writing about some of the issues I faced as my mom’s disease progressed, things like the extra complications Alzheimer’s adds to other illnesses, legal documents you may need, the decision on if and when it’s time to consider admitting your loved one to a professional care facility, hospice considerations.  Listing those subjects here makes them seem cold and clinical and clear-cut. They are none of those things—instead, they’re intimate and emotional and confusing. But as you think about them, and as you read and hear how others in your position have dealt with them, you’ll find yourself putting your own head and heart into your own personal caregiving journey. The panicky “What-if’s” will give way to deliberate consideration of wise options for the one you love and care for.    

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How long must I wrestle with my thoughts and day after day have sorrow in my heart? But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord’s praise, for he has been good to me.  (Ps. 13:2,5-6 NKJV)

Dear God, time is your creation. Protect us as we travel through it, holding tight to the hands and hearts of those we care for. Protect us from fear and doubt and panic.  Remind us of your unfailing love–help us revisit the many, many times you have held us up and helped us move forward. Give us Your wisdom to see what matters, deal with what is, and plan for what will be. In Jesus’ sweet name we pray. Amen.

 

 

 

 

 

 

Tissues in Your Pocket

Most Alzheimer’s caregivers realize early on that we have little control over what any day will bring. Planning each day in advance may give us a sense of control, but so much of Alzheimer’s is unpredictable. Based on my experience, caregivers spend at least as much time reacting as acting.

are-you-ready

One of my mom’s major goals in life was to be prepared for anything that might happen to her or her family. I remember her purse was both tool box and first aid kit, containing a screwdriver, bandages, string, scissors, various nuts and bolts she had found on streets and sidewalks—once I even saw a fish stringer in there. But the things we used most often were the tissues she always carried. She stuffed her already bulging purse with them and stashed them in every pocket on any piece of clothing she wore, “just in case.”

“Just in case.” That phrase covers a lot of territory for caregivers. We can’t predict what might happen in the next few minutes, much less the next few hours. But…unpredictable doesn’t have to mean unprepared.

For caregivers, being prepared is a state of mind.

I wish I had seen that truth earlier. Instead, of all the emotions that rolled over me during my first weeks of caring for Mom, fear was predominant.

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Fear hung around long after shock left. I spent only a couple of weeks being surprised at things like Mom putting Dad’s shoes in the trash, or telling me how lovely the artificial flowers smelled at the grocery store, or accusing the neighbors of peeking into the windows. I soon learned such things were simply to be expected.

Anger lasted longer. I was angry at the disease, at my father for hiding it for so long, at myself for missing the signs, and, yes, sometimes at my mother who often seemed to enjoy the chaos she created. But after a while, anger became a motivator. My frustrations prodded me to look harder for cause and effect relationships I could use to smooth the rough road we traveled each day.

For example: I learned I didn’t always have to explain to Mom what I was going to do. Announcing I was about to brush her hair or help with her shoes often resulted in a barrage of “No’s,” maybe because she felt I was telling her what to do. So I began to say less and simply do what had to be done. When my actions were a surprise to Mom, it took a minute or two for her to puzzle them out. By that time the job was usually finished. Using the disease against itself lessened my anger and fueled my confidence.

Still, fear of catastrophe stuck around for a long time. I was afraid the time would come when I couldn’t control Mom’s anger and she or someone else would get hurt. Would I be able to get her to take her medications every day? What if I couldn’t make her get into the car? Or out of it?state-of-emergency

Adding to the pressure of my fear was the feeling I absolutely had to make things work. I had stepped into caregiving of my own accord. No one asked me to. Dad couldn’t do it alone, and he refused to allow a nurse or professional into their home. So, ignorant of what I would be facing, I just jumped in. But after only a few weeks, I began to question whether I could manage Alzheimer’s alone. I started each day with dread, praying for help, praying for a miracle.

And you know what? Miracles came. Not the sudden cure I hoped for, but miracles nonetheless. Little ones I almost didn’t notice at first, like a close-in parking space when we were running late to an appointment. There were big ones, too, huge ones like the doctor who finally found that Alzheimer’s wasn’t the only danger Mom faced: He diagnosed her severe depression and prescribed the medication that gave her, for a while, more good days than bad.

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In fact, so many miracles came my way, I began to expect them. On some otherwise-impossible days, Mom would at least agree to take her meds. When we were out of the house, I realized people seemed to sense her instability. I learned how to steer her away from situations that, I knew from experience, might provoke her anger. If she refused to get in the car, I postponed the errands and rescheduled the doctor’s appointments. If she refused to get out, I sat with her until she got tired of saying no.

Although some of the solutions worked pretty reliably over time, I knew no amount of advance planning could ever address the daily challenges of Alzheimer’s. But I was freed from paralyzing fear because I began to expect an answer in difficult situations. And because my trust was based, not on my power, but on the power and faithfulness of God, I stopped imagining disaster. Because I believed  the Giver of all good gifts, the Maker of all miracles,was on my side, I could think more quickly and clearly, come up with a way, find one more miracle.

As the Alzheimer’s progressed, Mom continued to pick up her tissues and put them in the pockets of the old green cardigan she wore every day. I took a few out every now and then, secretly of course, so she’d have room to add more. The day came, though, when it no longer occurred to her to pick them up. So Dad and I did it for her. Putting a fresh tissue, carefully folded, into her sweater pocket made us feel a bit more powerful in the face of Alzheimer’s. “Now, Mama,” I’d say. “Now we’re ready for anything.”

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For me, the miracles that carried us down the rocky roads of Alzheimer’s are like tissues I saved in the pocket of my spirit. There were so many problems, but so many more miracles. And each problem solved was a promise of more solutions to come.

I pray you fill your own pockets with confidence. Begin to expect miracles. Watch for them. And in the hardest times, remember the ones God has already sent. Each one carries His assurance: He is with you, to help you. He will never leave you alone.

With a pocket full of faith, we’re ready for anything.

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You will not need to fight in this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you….Do not fear or be dismayed… for the Lord is with you.     (2 Chronicles 20:17   NKJV)

Loving Father, we know You are on our side. We know You can do all things. We know You want us to come to You with our fears and our needs. Thank You for fighting on our behalf. Even in the face of Alzheimer’s, Your constant love casts out our fear.

 

Parenting Our Parents

An incident I witnessed on a vacation many years ago continues to shine a light on one of the hardest tasks of caregiving.

During our hike through a national park, our family stopped in a picnic area to have lunch. As I made sandwiches for my three young sons, I could hear wails from the picnic table next to ours.

“But Mom, it’s my money.” The little boy’s face was red; his eyes were swollen.

An older girl and another boy, siblings, I’m sure, looked almost as sad. They watched the mom as she said, “John, I know you worked hard for this money. But you aren’t taking good enough care of it. If I hadn’t seen it and picked it up, your allowance would still be back there on the counter in the gift shop. You can spend it, but I’ll carry it with me.”

I tried not to stare, but I couldn’t escape hearing John’s next plea: “But Mom! I’m old enough! I’ll do better. Please?”

monkey parent“Johnny,” his mom answered, and I’m pretty sure I heard tears in her voice, too, “I don’t want you to lose everything you worked for. If you lose it, all of us will be unhappy. I’ll take care of it for you.”

I remember how sorry I felt for Johnny. But I hurt for his mom as well. We want so much to make our children happy, but there are times when we just can’t. Sometimes we have to say no.

Since my children are grown now and have children of their own, I thought I was free from having to make those hard choices. I was mistaken. Like many caregivers, I had to step back into the parenting role again.

Parenting my parents.

Mom was in her sixties when Dad realized she could no longer balance the checkbook. Mom had always paid the bills; Dad took over that job, too. As pots and pans were scorched on the stove because Mom forgot about them, Dad became the cook. When he ran out of clean clothes, he started doing laundry. They went to the grocery store together; Dad did the shopping while Mom wandered up and down the aisles, stopping to look at greeting cards or artificial flowers or bars of soap.

Dad kept these changes to himself for as long as he could, but eventually Mom’s behavior became so bizarre it could no longer be hidden.

“Why didn’t you tell me, Dad?” I asked after one of Mom’s harder days.

“Now Katrinka, I wasn’t hiding anything. I figured your mama just wasn’t interested in her old routines anymore.”

Balderdash. You don’t raise your children or your parents without coming to know them inside and out. And I know that, inside, Dad was 1) afraid of the possibility Mom was ill, and 2) determined that if she was ill, he would keep their home running just as it always had. “Normal.” That’s what he wanted. The two of them living in the pink brick house, taking care of each other, as they had ever since they were married.

help when you need it

While they did stay in their home, “normal” became me spending my days with them in the pink brick house. At first I helped Dad take care of Mom. Later on, when macular degeneration rendered Dad almost blind, I found myself more often in the role of parent, mainly to Mom, but sometimes to both of them.

Remember when you put things like scissors and knives and matches away, out of sight and out of reach of your children? That’s one of the first things I did when I discovered Mom had Alzheimer’s. I hid anything I could imagine might cause her harm if she used it incorrectly.

And that was just the beginning.

Dad and I had to watch closely to make sure Mom didn’t turn on the range or other appliances. Once I found her using one of Dad’s screwdrivers to open a package of paper table napkins, so the tools were moved to a safer place. We no longer left Mom at home alone, even when she insisted she’d “be fine.” She would sit right where she was, she said, while I drove Dad to the bank or the post office. But I had to say no; Mom had to come with us. She didn’t cry like little John did. She became angry, shouting and waving her arms. We’d wait, ask her later if she’d like to go for a ride, and sometimes she said yes. When she said no, Dad and I postponed our errand.

Out of desperation, sometimes I treated Mom as I had treated my sons when they were children. I often bribed her with ice cream or lunch at her favorite café if she’d go to the doctor with us first. Sometimes I made up stories about the magical powers she would gain by taking the medications she didn’t want to take.

Like Johnny’s mother, I knew I had to take charge. Certainly Mom, and often Dad, too, simply weren’t capable of using good judgment when making choices and decisions. Mom, of course, was impaired by Alzheimer’s.

rabbits eye to eyeDad’s judgment was impaired by his love for Mom.

The no’s to Dad were always hardest. No, it wasn’t a good idea to plan a big party at a restaurant for Mom’s birthday. No, taking Mom camping “one last time” in their bright yellow tent might be fun for him, but not for her. No, I didn’t think it was wise to take a long trip in their travel trailer. No. No. No.

Like Johnny, Dad made promises. He promised to ask people to be quiet at the party. He would gladly pat Mom’s back ‘til she fell asleep in the tent. He was sure she’d love a trip in the trailer, but if she asked to come home, he’d bring her home, right away. He promised to tell me when he couldn’t see well enough to drive.

normalFrom Dad’s perspective, I’m sure it didn’t seem too much to ask for simple, normal life. How I wanted to give him just that! And I tried. But from my perspective, it was a struggle to maintain whatever modicum of normal we could hold on to.

Of course, Alzheimer’s was the problem. Both Dad and I tried to say no to Alzheimer’s. Neither of us was successful…except in one regard: somehow we managed to say no to the disease stealing all our joy. Specifically, I kept my eyes and ears and heart alert for the occasions when life felt like old times. I made sure Dad noticed on mornings when the three of us sat at breakfast with toast and tea. I rejoiced openly when we arrived home from the store and Dad and I put away groceries with Mom telling us what to put where. I prayed with gratitude as my husband and I watched Gunsmoke with my parents: Mom asking the name of each character, Dad answering her and then offering everyone something to drink.

foxesNormal.

As I held on to as many of the routines as I could, I also held on to my temper. Usually I was able to resist the frustrated tone that tried to creep into my voice; instead, I held on to the respectful attitude I had learned from my parents. There was no question in my mind that each of them deserved my respect as much at this time of their lives as they ever had.

Easy? No. Whoever said, “The hardest thing about everyday life is that it’s every day” spoke truly. And most caregivers recognize the words as an extreme understatement.

But let’s also be sure to recognize the bigger truth of caregiving:
As we work to preserve what we can of the “normal” life of the past, we’re also safeguarding—in the present—something even more precious: our loved ones’ dignity.

Children, obey your parents in the Lord, for this is right.  “Honor your father and mother,” which is the first commandment with promise: “that it may be well with you and you may live long on the earth.”   (Eph. 6:1-3 NKJV)

Father, help us to be patient with those we care for as You, Father, are patient with us.

How Do You Feel? Think About It.

If only we could guide our loved ones to act and feel in ways that would make caregiving easier for everyone. Of course that’s impossible. But we can help ourselves. The problems we experience with our personal lives and emotions are within our power to resolve. And when a caregiver helps him/herself, the person cared for also benefits.

We’ve talked in earlier blogs about isolation and loneliness. We’ve talked about frustration and exhaustion and the conflicts between duties at home and duties as a caregiver. For me, embarrassment was another challenge.

Embarrassment led me to do things that were definitely not in Mom’s best interest.

When I was a young mother, I was embarrassed any time one of my sons misbehaved in public. I felt the hot color rise to my face and I was certain everyone around thought my boys weren’t being raised properly. Years later, I felt the same embarrassment as a caregiver. When Mom refused to answer a neighbor’s hello, or went somewhere wearing spotted clothes, or shuffled her way around the counter to hug a cashier, I was humiliated. Surely people were thinking I was the caregiver—didn’t I care how Mom acted or dressed?

I did care. I blushed when Mom pointed to an array of artificial flowers and suggested to another customer he should smell them. I tried to hurry her along as we walked from lobby to examining room at the doctor’s office, hoping the others waiting in the long line of chairs wouldn’t notice her mismatched clothes and dirty hair. In restaurants I was so afraid she’d lose her grip on a cup or a glass, I practically held it myself.

How could I solve this problem with Mom, I asked myself. How could I get her to dress right and act right and be more careful?

I worked hard–and made a lot of mistakes.

  • I timed our errands carefully, trying to choose a good time on a good day. But those times were utterly unpredictable, not only as to when they would occur but also as to how long they would last.
  • I put some of Mom’s favorite clothes aside, the ones she liked that still looked presentable. I saved them for her to wear on errand days. But telling her what to wear on any day was seldom successful. So I withheld her favorites from her when she wanted to wear them and tried to make her wear them when I wanted her to.
  • Mom usually enjoyed going out to eat, but her hands were unsteady. Fearing she’d spill something, I made the meal an ordeal for both of us, as I cautioned her with every bite and reached across her to steady her tumbler of water or tea.

What was I thinking??

The problem is that I wasn’t thinking. I was only feeling.

dog afraid

One day as a waitress was serving us breakfast, I held Mom’s hands back so she wouldn’t reach for the plate herself. The waitress looked at me and said, “You don’t have to hold her. She’s all right.” Then she focused on Mom and smiled. “We can work together here, can’t we?” she said. Mom’s face lit up like sunrise.

That incident prompted me to look harder at myself. I had told myself I was protecting Mom’s dignity, protecting her from embarrassment.  But looking back on the happenings of that morning, I saw clearly that the waitress was right. And I was wrong. I had felt I was taking care of Mom. But I wasn’t doing a very good job of it.

As I accepted that I was wrong, I knew I had to change something. I thought about it. A lot. What I discovered as I dug into my feelings—journaling about them and sharing them with those close to me—is that the motivation for my actions was not concern for Mom’s dignity, but for mine.

I was protecting myself from embarrassment. Adding stress to our days by trying to predict Mom’s moods. Denying her the pleasure of wearing her favorite clothes by hiding them until I decided the time was right. Stealing her fun in eating out by treating her like a rowdy child.

Once I identified what I was really feeling, I realized I was the only one who could fix my mistakes. Take Mom out of the equation. So I thought some more.

  • I began to see that how Mom acted in public was important only insofar as it affected her safety.
  • Experience led me to understand that what she looked like was much less important than what she ate, how well she slept, how regularly she took her medications.
  • And instead of worrying about her spilling a glass of tea, I solved the problem by simply asking that her drinks be served in a small paper cup, lighter, easier for her, and safer. 

stock-dog playing

The stress level went down, for me at least. And because Mom seemed more relaxed as we prepared to go out, errand days became a little easier. But more important to me than either of  those benefits was the realization that my feelings of satisfaction  associated with helping Mom live fully and happily were far more pleasant than the embarrassment and frustration provoked by my false pride and embarrassment.

Of course it’s impossible to tell ourselves what to feel. But we can and must control the actions we take as a result of our feelings. Whether the emotion is guilt, fear, embarrassment, anger or any other of the feelings most caregivers experience, we can think about it, name it, and then either help ourselves or ask for the help we need.

When we take care of ourselves, everyone is better off.

I instruct you in the way of wisdom and lead you along straight paths. (Proverbs 4:11 NIV).

Father, please open our eyes to see clearly our loved one’s needs, and also our own. Guide us to the truth, and help us use it for the good of those we care for, to bring them, and ourselves, more abundant life.